Out of My Mind

I read "Out of My Mind" by Sharon Draper this weekend. I had heard about the book a couple of years ago and was told that it was probably a little old for Lucien at that time. I decided to read it to see if I thought he was ready for it. He is. I would like everyone who knows Lucien or another kid with CP to read this book. It is written in the "voice" of Melody, an eleven year old girl who has CP. She doesn't walk. She doesn't talk. She really can't do anything independently, but she is exceptionally bright. No one know because she can't speak. In fact, her mother was told by a "specialist" that she is profoundly mentally retarded. After years of spending hours each day in a contained classroom, a teacher comes along who sees Melody for the bright girl that she is. The book chronicles the ups and downs of being a fifth grader who struggles to find acceptance in an inclusive setting.

I was able to find many similarities and many differences between Melody and Lucien. Though Lucien is able to speak it is often difficult for to speak clearly enough to be understood. It can be a source of frustration. Lucien does rely on an adult at school to assist him in many areas, but he is also very independent and tries to do things himself or with the help of a friend. Lucien has been very fortunate in that he has always had a wonderful circle of friends and has not struggled with acceptance as Melody did. And, no one who knows Lucien has ever doubted his intelligence. Strangers are another story...

I want Lucien to read this story because I want him to know he's not alone in his disability. I want him to know that even though he struggles with things that are a breeze for a "typical" 10 year-old, he is more fortunate than a lot of children.

I'm glad I read this book. As a parent of a child with special needs, I feel like I need to or should be perfect. I've always felt like I shouldn't get angry with Lucien. That I need to be patient all the time. This story gave me permission to be human. We are parents. Whether our children are born perfectly healthy or disabled in one way or another, we are only human. Will will become frustrated. Our patience is not without limits. We will get angry and we may yell. I'm not a perfect mom, but I do love my children with all of my heart.

One big thing that made Lucien's (my) life easier...

We all have little things that make daily life a little easier or more manageable. Some things that are merely a convenience to you or I can be a game changer for child with special needs. I started reading to Lucien right away, as soon as he came to the US at 21 months. Literally...when I traveled to Ohio to meet him I had baby books in my luggage. We read our first book together sitting on the edge of the hotel bed our first morning together. Reading became many things. It was a means of introducing an unfamiliar language, stimulation for his senses and a close, quiet time that we could share apart from the noise and chaos of three older kids. Lucien loved our reading time as much as I did. As he grew older though, reading became a source of frustration for him. He was a little bit late starting to read. For reasons I still don't really understand, Lucien was a much better speller than he was a reader. He began to catch on in first grade, but struggled frequently and was generally about a year below grade level. Reading was not something Lucien could do independently due to his CP. Visual tracking was difficult for him and his interest level was higher than the picture books that had optimal text size and spacing for him to successfully track. Even if he could track successfully he couldn't manage to turn a single page without assistance. This was frustrating for a child who strives for independence. 

Last spring, to celebrate another successful semester of college, I bought myself a Kindle. I quickly realized that I was able to adjust the font size. I increased the the text to that each page contained 20 -30 words. I presented it to Lucien and showed him how to advance the pages. I asked him to read for a few minutes. I kind of hovered at first, and as he began to read page after page I started to get really excited. I haven't really had much of an opportunity to use "my" Kindle since then. Lucien sleeps with it under his pillow and the first thing he does each morning is read for a minimum of 30 minutes. School ended for the year on Wednesday. I am proud to report that Lucien is reading at grade level completely independently! I don't know if this would have been possible without the Kindle. 

My little Sicko :(

Obviously this is an older photo, but it fairly accurately illustrates how Lucien is feeling today! I don't have friends with kids who have CP so I never know what is "normal" in any given situation. When Lucien gets sick it effects him much more than most typical kids. Even a little cold will create havoc globally. It used to be that he would have toileting accidents a day or 2 before any other symptoms appears. If he had an accident at school, I knew for sure that he was coming down with something. Even though he had attended pre-school and remained fairly healthy, kindergarten was rough. He caught everything that was going around. I was beginning to be concerned that his absences were going to set him back academically. Fortunately, the has enough control that accidents are no longer an issue for him, but it still messes him up. He's healthy most of the time, but when he gets sick now his dystonia gets really bad. He can't feed himself, he has a hard time sitting up, and gait training is a disaster. It effects his speech too. it's more difficult to understand him. It takes Lucien longer to get over an illness than most kids too. A couple of years ago he got the flu (in spite of having had his flu shot) and it took six weeks for him to fully recover.

So, Lucien came home feeling pretty lousy, but he isn't much of a complainer. I think he's glad that he'll get to lay around watching TV, playing video games and eating ice cream for a few days. Does anyone else's kiddo get more sick than most?

The end of the school year is upon us and I feel it is important to offer my sincere thanks to all of the folks who work so hard to ensure a successful school year for Lucien. He is "stepping up" to fifth grade on Monday! Ubelieveable! Thanks so much to "team Lucien" ... Cassie, Debbie, Diane, Kathy, Sara, Jenn... And an extra special thanks to Angelina, who is always just what Lucien needs her to be. Much of Lucien's academic success has been possible because she was in his corner. We also owe a ton of thanks to Lucien's friends who are kind and intelligent enough to look beyond Lucien's disability to see the more-normal-than-not kid he is. This great group of boys and girls have been his friends and his cheerleaders. They have included him in team sports with the attitude that including him is more important than winning and he worked really had to not let his team down. Thanks so much to all of you! Some of you we will see again next year. Some of you will be moving on to other endeavors. Good luck in all that the future holds!

How do YOU address a child with special needs?

Do you smile at them? Do you say"hello"? Do you address their caregiver instead? Do you pretend not to see them at all? 
Sometimes well-meaning people lose sight of boundaries and common sense. Today, for example, I was at the grocery store with Lucien and his 7 year old sister. We decided to use his gait trainer rather than the wheelchair on this particular excursion. Just after we arrived and entered the store we stepped off to the side so I could correct an adjustment on the gait trainer. I finished and as we prepared to re-enter the "flow of traffic" a woman headed out of the store put her hand on Lucien's shoulder and giving it a little squeeze said,"Awww, baby." I was furious! This was not a friend or even an acquaintance. This woman was a complete stranger to myself and my children. The fact that my son is disabled does not negate his right to dignity and respect. I didn't see her lay her hand on any other child's shoulder. Maybe because common sense dictates that we don't go around touching children that we don't know. This is the least of my anger. Lucien is not a baby. He'll be 10 in a few days. He does not appreciate being referred to as baby or a baby. Lucien is not pathetic. He doesn't need or want the sympathy or pity of that woman or anyone else. 
This stranger saw Lucien and in that instant concluded that he was pitiful. Why? Because he was using a walker? Because he has CP? Lucien doesn't feel sorry for himself. If you asked him, he'd probably tell you he's got it pretty good. He has a family who loves and supports him. He has wonderful friends who include him in everything they do. He has a lot more than many kids his age. In fact, by far, the worse thing that happened to Lucien today was that a stranger put their hands on him in a way that frightened him. He though this woman was trying to snatch him from the store. A single touch, by a well-meaning stranger, erased his sense of safety.

Words of Wisdom from Lucien...

In spite of the challenges that he faces on a daily basis, Lucien is one of the most positive people I know. A couple of years ago we were at my mother's home for Thanksgiving. We have a large, close extended family and traditionally spent all of the major holidays together. The dining room table was extended into the living room. Lucien let me know that he needed to use the bathroom. There was little space between the table and doorway and I am not a tiny person. I said, "I don't know Lucien! I'm not sure I can make it through there. I don't think I can!" When we finally squeezed through I told him, "Oh my gosh! We did it!" Lucien looked at me very seriously. He said, "You know what your problem is mom? You don't believe in yourself. Take me for example..." He went on to describe a specific incident in which he had faith in his ability to perform a task and was ultimately successful.

Just the other day in the car Lucien said, "You know, mom... There are 2 kinds of people in this world. Some are glass half empty people and some are glass half full people. I think I'm a glass half full kind of guy."

You sure are Lucien...

How is it that he's got this all figured out at nine and I'm still trying to figure it out?

In the beginning...

Here we go!

Lucien joined our family in March 2004. He arrived from Haiti a 21 month old toddler the size of a 9 month old with the development of a 3 month old. I knew he was my son a couple of months later when I took him to his first neurology appointment. I was told that he had Choreoathetoid Cerebral Palsy. I was told he would never walk or talk or ride a bike. I sobbed. Then I got angry and refused to accept this nonsense as truth. Over the next 4 years, Lucien learned to roll over, 

                                    

                                                                        sit up,

                        crawl, pull up to standing, cruise on furniture and walk with a gait trainer.

             He went to preschool.He finished kindergarten. 

During first grade he saw a second neurologist who confirmed the diagnosis, but after observing Lucien and reading his academic records and the reports furnished by the multitude of therapists who work with Lucien he told me "Thank God he's not bad." I don't know what expression my face wore as I tried to absorb these words, but I know what thoughts were racing through my brain...*What is he talking about, not bad? My 7 year old needs to use a wheelchair for his primary means of mobility. My 7 year old's speech is barely intelligible. Thank God he's not bad?!* I felt alone. I didn't have any friends with children who were physically disabled. I needed a support group where I could talk about these feelings that I was having. I needed to talk to someone who understood how I felt. I needed to talk to another mom who had a child like Lucien. I couldn't find a support group in my area so I joined a group online. They were very nice people. They talked about things like feeding tubes (Lucien doesn't need a feeding tube), seizure medication (doesn't need that either), severe cognitive deficits (Lucien is very bright), contractures (nope). I didn't find a "friend" who had a kid like mine. I found something else. Gratitude. I listened to all of these parents who will have to take care of their multiple-disabled children for the rest of their lives. Then I looked at my boy, who is gaining independence every single day, who is so smart, such a social butterfly in spite of his difficult speech and is so happy and healthy. With tears in my eyes, I though... Thank God he isn't bad.

Lucien has and will continue to face many challenges in his life, but he faces each with ease and grace. He has been an inspiration to so many people. And, he inspires me every day. He makes me want to be a better person. I want to be just like him when I grow up.

This is not my first blog, but it will be my best!